Back in mid-January, my son Jonah, who battles junctional epidermolysis bullosa on a daily basis, got the flu. I had (unintentionally) neglected to get him a flu shot, and although it was influenza B — supposedly the less severe strain — and he was on Tamiflu (oseltamivir), it kicked…
People with recessive dystrophic epidermolysis bullosa (RDEB) often experience a profound loss of nerve cells in the front of the eye, accompanied by increased numbers of inflammatory immune cells, a study found, suggesting that treatments to promote the health of these nerve cells and reduce eye inflammation may be…
What began as a few friends jumping into icy Massachusetts waters to support a neighbor has surged into a global movement, with the 9th annual Plunge for Elodie set to raise millions for epidermolysis bullosa (EB) research this spring. Running from March through May, the fundraiser has…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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